Thursday

Since stopping the Prednizone steroid, Riley's appetite has returned to normal. His energy has also declined a little. He does not have the same zip as last week, even after a blood boost. Tom doesn't think it is possible to hit the marks, but I tell him to be patient, give it time. He feels the doctors have started hinting at the marrow transplant. I am not convinced. I think they are just honestly answering his questions.

Only 20 to 30% really have permanent success with this treatment. They are not necessarily the people with numbers as critical as Riley's. He could be in the minority, though. If not, there is a good match out there. I don't want to rush. Tom said today he felt like time was blowing back his hair. The weeks pass with transfusions each time. Success is no transfusions. We are still down in the gutter for platelets and Red. Platelets need to hold consistently above 15 or 20 to show success. Even then we need to be above 80 for a normal life. Riley is down around 7.

Today he was at 6 platelets. His zits had started to scab. He told the doctor he knew he was getting platelets before the blood was drawn. Red was at 7.9 so we got another unit just to see us to Thursdays again. We don't want another trip to the ER this weekend. I can see peteccia on his legs today. Its the first time since the horrible day over a month ago. I t is not a good sign.

This week is going so fast for a stay-cation vacation. I was glad the neighbors all stayed in town. The boys have had lots of healthy playmates coming and going in the house. Riley even went next door for a change of scenery for a couple hours. His whites are going up due to his blood booster shot every night. 1.9 today. Our goal on whites is 5. We are just not seeing those same kind of results with the reds and platelets.

If we do marrow, they will kill the whites again and we will be back in isolation in the hospital ward again until well after surgery. Not a fun prospect. Riley has the stages of time down. Today he came back to our cubicle after going to the bathroom. He said there was a week two arriving. I asked how he knew. He said the grandparents were there bringing gifts. Week one is the dads, week two is the grandparents, week three is the friends visiting with gifts. That's when you pass the freaked out stage and get into the pattern that will continue indefinitely.

I just keep reminding Tom be patient maybe time will improve those other two numbers. The whites look good.

Meanwhile, my nose started running last night. I tell myself it is allergies, even though I really don't have allergies. I dose myself with Dayquil and benedryl and tons of vitamins and water and juice. Anything to make this go away fast. It is helping, maybe. I wash my hands frequently and try to keep away from Riley. He has a mild runny nose. I have him drink lots of water to flush his system. Hopefully it will just go away. Everything is stressful these days. A cough or sneeze or just a drippy nose is a major concern. Things I used to ignore, now are in the forefront of my life.

Surprisingly I find peace in the clinic. It is what it is. While I am there I can't be cleaning or sorting or telling myself I should be doing those things. Sitting in that cubicle is an escape in itself. Riley and I work on his homework, which he has been neglecting. Tomorrow is a big
math test with the tutor. He tells me he is ready.

He is enjoying researching an Oregon Trail project his teacher assigned. Its not really part of the curriculum but She thought it would be a fun project for him. Gigi stopped by and told him stories about our ancestors. Her family crossed the Oregon trail from Tennessee to St Louis, Missouri to start the trip. She says her grandfather tells of one of his infant sisters rolling out of the wagon, getting lost on the prairie and never seen again. She knew the names of all seven children that made the crossing to the Willamette Valley.They settled in Coos Bay. I tell Riley he could do it using his real family history. I think he will enjoy this project.

The red finally finishes, after the platelets are done first. We wait now, it is after 2:00 pm. We started the day arriving at 10:00 am. Margaret stops by to say hello. My little sister is flying in from New York for her spring break. I am looking forward to seeing her. I am so glad I don't work. I would have been unable to adjust as well to our new demands. I am amazed at how easy I have fallen into this daily routine and crisis avoidance. Stay positive and don't dwell.